Friday, September 25, 2009

A Fighting Chance

The fat lady has sung and yours truly has done the impossible. 55+hours of lecture is complete. Lucky for me my brain is amazing. Glenn Doman, Institute founder, said "The brain is the only container that has this characteristic: The more you put into it the more it will hold." If there is only one thing that I've learned this week it is that the human noodle is frighteningly amazing. The human brain has, by conservative estimates, a trillion cells. Now while that might not be a big number if you're the leader of the free world, to me, a railroader from Utah, it's HUGE. Now Charlie's brain has been profoundly damaged but in no way has his entire brain been hurt. Since he got sick I've been obsessed with how many brain cells he has lost, how hurt his thinker is. I've never realized how much good brain he has left. Call me a pessimist, -Guilty. I blame Gammy, my grandmother. I grew up watching every BYU game with her and no matter who the Y was playing we were sure to get beat by 50. She kept this pessimism until the Cougs were up by 30 and only then would her faulty elimination clear up. Her condition was almost Pavlovian, Cougs get scored on she'd head to the lou.

Charlie has millions- even billions of healthy brain cells left and now begins an almost impossible journey of catering to those healthy bits. The places in Char's head that have been hurt are sadly dead. They are not coming back. The miracle of the brain is that the other parts are very willing to pick up the slack, we just have to tell/show them how. That makes it sound easy, it won't be. However, we have seen this week with our own eyes living evidence that it can happen. Some have said that we are crazy for coming here; "They'll just give you false hope and take your money with no guarantees." The thing that I've discovered from other parents here is that we don't want or need guarantees, we just want to be given a fighting chance.
What we are about to embark on is going to be monumental. We are going to attempt to heal the brain of our hurt little boy and for this we just might be crazy. We are going to try to get Charlie to see better, hear well, feel pain and pleasure, crawl and maybe someday walk, communicate, use his hands and even read. I know that our doc's and therapist, who we love dearly, are going to think we are crazy. But if they are honest with you, even they will tell you Char isn't progressing. So for us it would be foolish to continue doing the same things we've been doing and expect different results. This is our biggest motivation for wanting to try something different. I'm not saying that we are going to bag all of Char's other therapies, we're not. We simply want to do more, differently. We look at this as a change in direction. For the last 16 months we've been treating the symptoms of this brain injury by focusing on stiff joints, weak muscles and foul mood. This program is designed to treat the injury itself, the brain.
What sucks for all of you is that we're going to need your help. Since Charlie got sick so many of you have been there for us; sacrificing time, effort, $ all to help our boy. Now I'm asking you again. We need your help. This program takes bodies and time. What I don't want is our plea for help to make us a social pariah. If you don't want to help or aren't able, that's totally fine. But we don't want you to avoid us or Charlie because your worried we will bug you for help. We won't. When we get home, my sweet bride will get the schedule set up and the program outlined and we will let you all know about it.

Wednesday, September 23, 2009

Day 3 Revisited

Today was the most informative of the week so far. We really got into the nuts and bolts of the program. Most importantly we learned how much work it is going to take to carry out this program. This is going to be intense. Today was solely focused on the physical aspect of the institutes therapy methods. As part of the presentation they had several kids from the program come in to our auditorium and demonstrate a few of the techniques. It was pretty impressive. The highlight for us was when they brought out a 6 year old boy from Calif. and his parents. This boy has been in the program for about 4 years now and when he started he had a very similar neurological diagnosis to Charlie. He was immobile, no head control, partially blind and deaf, no speech, etc... This boy was demonstrating a crawling technique and then when he was finished his father called to him, and to all of our amazement this kid let go of the stand he was holding on to and RAN to his father to give him a hug. We were all pretty blown away. This was the first living proof of the stuff that happens as a result of the therapy here at the institutes. One thing that Ang and I think is a little shady is that they are, here at the institutes, very willing to talk about all of their successes but there is rarely a mention of the failures. Hmmmm.

After seeing the amazing things these kids with hurt noggins could do and all their neat tricks the staff announced that it was now time for a practicum of our own. This was hilarious, and the picture below isn't a good one but it was the best I could do whilst being very sneaky considering we weren't supposed to have cell phones in the auditorium. We were told to put on these crazy coveralls so that we didn't ruin our clothes and then we, grown people from all over the globe who had paid significantly to be here, took turns crawling and creeping around on the floor. It was hysterical. We were supposed to be relating to the process that our hurt kids are going to go through but I just felt like I was supposed to be changing someone's oil. Some of the parents really got into it and took off their shoes and socks to that they could have as much tactile stimulation as possible. Angel and I just got in trouble for trying to race each other and we most hastily had our behavior appropriately amended by one of the staff. The unfortunate part of the practicum was that the prescribed uniform (coveralls) was anything but practical. By that I mean that they couldn't be anymore ill fitting. Especially for the larger gentlemen in the group or those w/ "athletic" builds. They were tight in all the wrong places and the first time I bent down to initiate my crawl I was nearly cut in two by this wretched garment. Throughout the exercise there were more than a few giggles from the participants as we stood, with knuckles on parade, waiting for our turns to crawl. Rest assured I set the fashion bar high as I modified my "adult jumpsuit" as best I could. Popped collar, zipper halfway down (like Magnum P.I.), and pant legs fully stove-piped into the cowboy boots. I was one oily red shop rag hanging out of my back pocket away from flushing your radiator.
As mentioned all of this frivolity was in effort to give us an understanding of our hurt child's new home... the floor. I'll have to get into that thought in more detail when I'm not on this damn eastern time schedule. It sucks. You eat dinner, watch the news that starts at 11 pm and go to bed.

Tuesday, September 22, 2009

Random Thoughts from Day 2

Here we are, the end of day 2 at "The Institutes" and we're still not sure what to think about this place. It is all very different from anything that Angel and I have ever experienced in the world of raising a kid with a hurt brain. This course has been as advertised; very strict, regimented and taken VERY seriously by everyone here. Everyone except Ang and I. We, up till now have remained cautious and somewhat skeptical. We are keeping an open mind and have every intention of giving this our best shot while trying to stay realistic. We are but 2 of 60 people in attendance here and I think we are the only ones not "drinking the kool-aid." There are folks from four continents, 11 countries and 18 states.

The course has several instructors who do a fine job and are all very organized. It was a surprise to us yesterday when we came in from one of our 10 min. breaks and found in the front of the auditorium a very old man with a white beard. It was Glen Doman, founder of the institutes. We read his book before coming and he wrote it so long ago we assumed he was dead. He's not, he's 90. It was obvious that he is a very bright man. He is a pioneer in the Physical therapy field for brain injured kids. And while there are many who don't agree with his methods, you can't deny that his methods have produced positive results. Needless to say we were all surprised to see him and hear him lecture as part of his course. The staff here is also loaded w/ extremely bright people from countries all over the world who also share Mr. Domans religious like zeal for the institutes and the program. Angel and I have, however come to the consensus that the folks at "What not to Wear" need to come and treat the staff here to a bit of there therapy. Most of the outfits and hairstyles are straight out of "Dynasty" and "The Love Boat."

We've had a few chances to get to know some of the other parents and their stories, which are all very sad yet inspiring. There is a couple from New Jersey who's daughter suffered from anoxia at birth and is now severely handicap and O2 dependent. There is a father here alone from Sweden who has a son w/ CP. A father from Pennsylvania who's wife took the course prior and has a 22 yr. old daughter that was struck by a car and now has the mental capacity of a 1 year old. Two sisters from Israel who have a niece w/ a rare genetic brain defect and they are here taking the course for the mother who doesn't speak english. Then there is Mr. Pope, Angel's favorite. When and if you see here you'll have to ask about him because writing about him will in no way do justice to the joy that he has given my sweet bride.

We have learned many things about the brain injured child and Charlie's condition. We did a detailed evaluation of Char and we are glad to report that Angel and I are the proud parents of 28 month old boy with the Neurological capacity of a 2 month old. Believe it or not this is a bit more advanced that we though he'd be. We also learned that his injury is now diagnosed as a "Profound Bilateral Difuse Midbrain and Cortical Brain Injury." Say that 10 times fast. Apparently this is common among the kids that are treated here at the institutes and many of them improve to varying degrees and some of them even get better, completely better.